Key Takeaways

Joan Tavano learned that she had multiple sclerosis (MS) 20 years ago, when she was a single working mother trying to sell her house and buy a new one as her son transitioned to life at college. For the second time in several years, changes in her vision had sent her to the doctor, who recommended testing for multiple sclerosis. The diagnosis was overwhelming, she recalls, triggering anxiety and stress over her future.

Now 68 and retired, Tavano can look back at her life with MS and see that the disease did not result in the personal losses of work and independence that she had feared. She knows she was fortunate to be able to continue working until she chose to retire without having to disclose her condition at work. Yet she acknowledges that the uncertainty of her situation caused her to worry deeply.

“Maybe it’s my makeup to worry, or maybe it’s the MS,” she says.

Multiple sclerosis, by its nature, can be anxiety-inducing. Because the course of the disease varies with each person, it’s difficult, if not impossible, for doctors to predict how quickly any individual could become disabled. In addition, any loss of independence, mobility, work, and relationships that occur because of MS can feed into anxiety and depression.

It’s also possible that anxiety and depression result from biochemical processes caused by the disease itself. Research published in October 2016 in Social Science Medicine found that inflammation — the cause of nerve damage in multiple sclerosis — predicted depression, anxiety, and stress, rather than being an outcome of such distress. But other research, including a review published in The American Journal of Psychiatry in November 2015, has found that it’s a two-way street, with depression fueling inflammation and vice versa.

Whatever the root cause, anxiety and depression are common among people with MS.

Research published in the journal Multiple Sclerosis in February 2013, which looked at the prevalence of anxiety, depression, and fatigue among men and women with multiple sclerosis, found that more than 44 percent of the participants reported anxiety when the study began, and more than 18 percent reported depression. Fatigue affected the most participants — nearly 54 percent.

Tips for Lowering Your Anxiety Level

Many different approaches, from medication to meditation, can help individuals cope with anxiety related to MS. If worry and fear about MS are keeping you up at night or preventing you from enjoying your life, consider trying one or more of these strategies:

1. Seek out information about MS. Tavano, who receives care at the Stony Brook MS Adult Comprehensive Care Center on Long Island, New York, says the center’s regular seminar series helps her understand multiple sclerosis and ease her worries.

“I usually see people right after their diagnosis, and they will say to me that they are just overwhelmed,” Soeung says. Knowing they aren’t ready for in-depth discussions at that point, she says she deliberately loads them up with written materials so they can read up on MS at home and then come back with questions — a strategy she says works to assuage the first stages of anxiety.

Soeung also works with people who have had MS for years but are new to the center.

“I always feel awkward telling someone who has been living with MS what MS is, but it’s surprising to me how many people have their diagnosis and take their medications but don’t really know much more than that about multiple sclerosis,” she says.

Even people who've had MS for years can benefit from more information to give their concerns a realistic context, she says.

Working with a counselor such as Soeung and participating in an ongoing educational series at an MS care center or through your local chapter of the National Multiple Sclerosis Society will benefit you greatly. These groups provide information as well as opportunities to meet others with multiple sclerosis.

2. Speak to your doctor about MS complications. MS can cause a broad range of physical, cognitive (thinking), and emotional effects, any of which can contribute to anxiety and depression. In fact, some research has shown that people affected by bowel, bladder, speaking, or swallowing problems related to MS are two to three times more likely to contemplate suicide. But often, these complications can be improved with medication or rehabilitation therapies. If you’re experiencing troubling symptoms, ask your doctor about possible treatments.

3. Build your social support network. Tavano participates in a few support groups. Her favorite one brings together people who are at different stages in their MS.

“You’ll see people with different physical abilities, but we all can connect and understand each other,” she says.

Some people prefer to be with others who are more similar, however, and it’s important to find a support group where you feel comfortable. Try visiting a few to find a good fit for you.

In addition to support groups, social support can come from friends and family members, community organizations, colleagues at work or at volunteer positions, social or hobby groups, neighbors, and even pets.

4. Exercise. “I never went to the gym when I was working,” says Tavano. She says she felt too tired at that time to build exercise into her day. But in retirement, she's making exercise a priority.

The result: “I feel great," she says. "There’s something to that idea of endorphins — I leave the gym feeling amazing. I would encourage anyone with MS to exercise.”

5. Find a professional you can talk to. Having a doctor, MS nurse, or therapist you trust and can talk to can be reassuring when you’re anxious. For example, says Soeung, patients know they can call her whenever they feel overwhelmed and need to talk. She might just listen or help them work out a plan to cope with the problems they’re facing.

6. Ask your doctor about medication. Many people with multiple sclerosis take antianxiety medication or antidepressants to help manage their mood and improve sleep, which can be a casualty of anxiety.

"These medications are generally as effective in patients with MS as in the general population," says Afif Hentati, MD, a neurologist and MS specialist with NorthShore University HealthSystem in the Chicago area. And they are safe for use by those with MS as well, Dr. Hentati says, because they "do not interfere or interact with any of the disease-modifying therapies available to date."

7. Try meditation. When Tavano had the opportunity to join a small study on the effectiveness of meditation and mindfulness thinking in MS management, she took it. And she surprised herself by learning techniques that have helped her cope better with her anxiety.

You can learn to meditate by attending a meditation class or by using any of a number of online resources, such as the free guided meditations offered by the UCLA Mindful Awareness Research Center in Los Angeles.

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